By Kelly Medinger

05-15-2012

“To live – that’s really what we’re about. We don’t focus on the dying. We focus on enjoying what time remains,” declares Brenda Blunt, Gilchrist Kids Program Manager.

Gilchrist Hospice Care is the largest hospice provider in Maryland and serves 600 patients every day. Gilchrist Kids is a special program that serves pediatric patients. “One of the reasons we deliberately called the program ‘Gilchrist Kids’ and even created a different logo than the one used for our adult program is so that families didn’t have to see the word ‘hospice’ every day,” explains Brenda. Understandably, hospice is associated with the end of life and represents an especially difficult development for any family whose child is suffering from a terminal disease.

A Founding Supporter of Gilchrist Kids

The Knott Foundation was one of the founding supporters of the Gilchrist Kids program when it began in 2010. During the grant period, Gilchrist Kids grew from serving 4 patients to 15 patients per day.

The patients are most often referred from pediatric units at large Baltimore area hospitals such as Johns Hopkins, University of Maryland Medical Center, and Sinai Hospital. Approximately half of them have cancer, while the other half suffer from conditions including congenital anomalies, degenerative neurological diseases, AIDS, traumatic injuries, end-stage organ diseases, or rare genetic disorders.

Kids Just Want to Be Kids

Even though they are ill, most of the pediatric patients “still just want to be kids,” says Brenda.

So Gilchrist’s strong corps of volunteers helps each family to maintain a happy home life and sense of normalcy. A volunteer might decorate a child’s bed, bake cupcakes for school, cook dinner for the family, or even walk the family dog.

Beyond these volunteer efforts, the professional support Gilchrist Kids provides to families is exceptionally comprehensive: 24-hour on-call nursing visits; pain and symptom management; healthcare benefit navigation assistance; medication and medical supply delivery to the home; a child life specialist to work through complicated emotions with parents and siblings; bereavement support; and family and community outreach and education.

Pediatric Hospice Care – A Specialized Operation

It is important to note that the financial burden of running this type of comprehensive program is not light. Gilchrist Kids employs a team that includes a medical director and two medical consultants to oversee the staff: a neonatologist, a pediatric oncologist, and a general practice pediatrician, all with very specialized knowledge.

Moreover, their team of nurses, aides, counselors, and volunteers must travel to each child’s home to provide care. When compared to adults, it is estimated that these visits to pediatric hospice patients are twice as frequent and last twice as long.

The price of pediatric equipment is also very high – a pediatric hospice bed, for instance, can cost $12,000, and specially designed chest vests that help with breathing and secretions are $15,000. To help cover the multitude of uncompensated costs that arise, Gilchrist Kids must raise up to $200,000 every year.

Helping Those Who Need It Most

Yet all of these resources are priceless to each patient and family in the program. Brenda recalls one baby that Gilchrist Kids recently served:

When the baby was born, they didn’t expect him to go home. Two days later, the mom was ready to be discharged but she didn’t want to leave the baby in the NICU. She and her husband decided to call Gilchrist Kids, and we helped them bring their baby home. A couple days later, the mom said to us, “Wow, this is kind of fun – being a parent.” It turns out they had not prepared for being just “mom and dad.” They were first-time parents and were very grateful for all the help the nurses were providing, including education on normal baby care and how to bond with your baby. In the end, their baby lived for 12 days. When he died, the mom hugged me and whispered, “Thank you for taking something that could have been so horrible, and for making it not be.”

And that is the power of Gilchrist Kids: focusing on life and celebrating it until the very end.